As part of Cystic Fibrosis Awareness Week, 11-year-old Tayler and his family have been giving us an insight into what it's like living with New Zealand's most common, life-threatening genetic disorder.
Having access to the latest treatments and medical equipment, as well as support from specially-trained health professionals, is critical to Tayler's race for life.
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In just over a year participating in Go-Kart motorsport, he’s competing in nationals, wearing full protective gear – because the Go-Karts can travel up to 100kms per hour. And Tayler seems to have no fear.
“I like it when you are going to pass and you’re up beside someone – you just wing it,” he grins. Tayler’s got his own trailer and is being sponsored by Bill Russ Tyres, and also his grandparents who are extremely supportive of Tayler’s dream to race cars. He also loves rugby, running, trampolining and surfing – sports that are good for keeping his lungs healthy.
Tayler and his mum Stephanie have never hidden his cystic fibrosis and they are big supporters of Cystic Fibrosis New Zealand (CFNZ). Stephanie even has the number plate BRETHE on her car with the words – We need a cure!!! - Cystic Fibrosis NZ
Tayler’s photo often appears in CFNZ newsletters and he’s been on the front page of the East & Bays Courier. Stephanie is happy to share the story of her son’s diagnosis and how the family learned to cope.
“One of the reasons I’m so open about Tayler having cystic fibrosis (CF) is that if you try and hide it, it becomes more of an interest to people. We’ve always been very open at school and with friends and family that he has what he has.
At first it was a big deal at school with kids asking ‘why are you taking pills?’ But after finding out they don’t make a fuss or make him feel like he’s different. Tayler sometimes asks, ‘why did I have to be born with cystic fibrosis?’ That’s a really hard one to answer because there is no answer. He also asks why he needs to have to take tablets with each meal, and he’s old enough now for me to explain that they are important for him to digest food properly and put weight on.
I heard the midwife say ‘actually I’ve got the mother here with me now’. It was the results from Tayler’s heel prick test – he had come up as an alert for CF. She gave me the cystic fibrosis pamphlet and all I remember seeing were the words ‘life shortening’. After that I couldn’t think of anything else.
After Tayler’s diagnosis was confirmed with a sweat test it was full on from there – doctors, nurses, physios. I went into a dark place after that.
It took a long time to feel better – a good couple of years of grief. I became too overly involved in Facebook forums and other people’s stories. I was trying to get to know people who could tell me it was going to be okay and he was going to be okay. I also joined the Auckland Branch committee and just got too heavily involved in other people’s lives. I wanted to find someone who could say they’ve had a child with CF who can live forever.
It was doing me more harm than good. In the end I knew I had to take a step back from social media groups. By then I think cystic fibrosis had become normal to us. I guess you just learn to accept it. I’ve recently read there are three stages of cystic fibrosis. 1. You want to wrap your child in cotton wool. 2. You become a bit more relaxed as they get older. 3. You end up doing a bit of both – and I think that’s where we are now.
We are fortunate that Tayler has got to 11 and not had a hospital admission. We have Tayler’s treatment routine sorted. It’s 20 minutes of hypertonic saline with a nebuliser and also PEP (physio) in the morning and then 30 minutes of PEP, hypertonic saline and pulmozyme in the evenings. We very rarely miss a treatment.
Rabbits and guinea pigs because of the hay, and bird poop contains a dangerous bacteria. One of the worst things is not being able to go in spa pools because the hot water and steam can be a dangerous reservoir for bacteria. There are often spas at his friends’ places and also holiday accommodation. And Tayler often asks why it matters.
It’s good to know there’s help available from Cystic Fibrosis New Zealand. In the beginning we had a Field worker and also a physiotherapist who made home visits to do physio with Tayler and teach him what to do. Three years ago we received quite bit of emotional support. We were going through some stuff and had home visits from the Field worker for family meetings which was very beneficial. We also get Breath4CF grants to help Tayler take part in physical activity which is key for his health. CFNZ also provides the nebulisers for Tayler to take his medicine. We receive car parking vouchers for our regular trips to the hospital for tests. The hospital staff are amazing as well. The CF nurse has been with us from day one and the doctors are pretty stable.
But there’s still the uncertainly about the future – you just don’t know what’s around the corner Personally I don’t think there’s anything positive about my son having CF. Maybe, we’ve met some lovely people along the way and maybe it makes you appreciate life more and to live for the moment, but I wouldn’t wish CF on anybody.
When Tayler was born we were told it was lucky that he’s born in this generation because of all the new medicines being developed overseas but New Zealand is denied access to them because of the cost. Here we are 11 years later and we are still waiting. A lung transplant is not a cure and I don’t want my son to have a lung transplant unless he needs one – but I don’t want him to get to that point.
My hopes for Tayler are the same as they are for all my other children, my older daughter Ashleigh (23) and youngest son Jordan (9) – neither of whom have CF. I want them all to live long, happy and healthy lives, and to have a family of their own one day.
Tayler’s dream is to win the Bathurst supercar race. He’s not the sort of child you can stop from living – it would be cruel to stop him from having a life.”
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